Tracy Lloyd has amyotrophic lateral sclerosis, meaning she has a life expectancy of two to five years.

But she's had that same life expectancy for going on 19 years now, and no one can explain how.

Her husband, Doug, has a whimsical theory that could very well be the right one, for all the doctors know.

"She's a thick-headed Slovak woman," he said.

By thick-headed he means stubborn, of course. Like famed physicist Stephen Hawking, Tracy has battled ALS — also called Lou Gehrig's disease, after the legendary Yankee first baseman who died of it — with confounding endurance.

Friends are trying to raise money for them and awareness of ALS.

(HARRY FISHER / THE MORNING CALL)

Science simply doesn't know why most patients succumb to the degenerative neurological disorder in a few years while a very few survive a decade or more. Hawking, diagnosed in his early 20s, is 73 and remains active as a theorist and writer.

Mentally active, that is. Like Tracy, Hawking has no use of his limbs. But his mind is as nimble as ever, and so is hers.

"We've always been told two to five years, two to five years," said Doug Lloyd, an Army master sergeant, when I met the Lloyds at their North Whitehall Township home the other day. "And we've been told that for years."

Tracy had an idea something was going wrong long before her diagnosis. When she was 24, she had episodes of numbness in her extremities and occasional fits of clumsiness. She and Doug wrote it off to the wear and tear of an active lifestyle.

Eventually, though, as the symptoms worsened, she sought help.

Because she was far younger than the typical ALS patient — most people are diagnosed in middle age — no one seemed to consider it a possibility. One doctor suggested Tracy was faking her symptoms for attention. She speaks poorly of him today, as you might imagine.

The symptoms worsened significantly when Tracy became pregnant with their son, Dougie.

That was in 1997. The newlywed Lloyds were living in Texas, where Doug was stationed. Tracy, a Cedar Crest College graduate, had left her job as a nurse at Sacred Heart Hospital in Allentown to follow her husband into the military world, happily anticipating the prospect of motherhood as Doug looked forward to rising through the ranks.

"She would have had 10 Army brats circling around by now," said Doug's sister, Brandie Moro, one in a network of family caregivers who help Tracy negotiate daily life.

Shortly after Dougie was born, Tracy fell while she was carrying him. A month later, in March 1998, after a series of tests at Walter Reed Army Medical Center, doctors told Tracy she had ALS. She had just turned 26.

She'd had an inkling this could be the diagnosis and knew what it meant. Indeed, she had hoped she had a brain tumor, because that, at least, could be treated.

"I was devastated," she said. "The number one thing was, I'm not going to see my son grow."

She speaks slowly, deliberately. That she can speak at all is another anomaly in the course of her disease. Hawking, for example, famously uses a computerized voice to communicate. But, again, Tracy hasn't been obeying the rules of ALS.

The Lloyds moved back to Pennsylvania to be close to family. Against her expectations, Tracy has seen her son grow — Dougie is 17 now, a junior at Parkland High School — and has celebrated birthday after birthday.

She is 43 now. She knows she could suffer a crisis at any time but forges ahead with the help of her husband, her parents — Dolly and Richard Hahn, who live with the Lloyds — and other family and friends.

The Lloyds live at the top of a hill, and their house is approached along a winding, quarter-mile driveway. They have a wheelchair accessible van, but it is old and failing fast.

A friend, Nanci White, decided to start an online fundraiser ( to help them buy an all-wheel drive, accessible van — they cost about $50,000 — and enlisted other friends to spread the word.

Friends are also holding an awareness event and fundraiser at 7 p.m. May 29 at St. John's UCC, 1415 Rising Sun Road, Laurys Station.

It will include the screening of a documentary, "Hope on The Horizon," produced by HARK, a New Jersey ALS charity. The event is free but donations will be accepted on behalf of the Lloyds.

"Tracy never wants to ask for anything," said family friend Susan Christman, who met Tracy through a book club four years ago.

Neither does Doug, who is retiring from the Army in September after 25 years and taking a job with the Northampton Water Authority.

His job as a recruiter in Harrisburg had kept him away from home several days a week, something he could no longer afford as his in-laws, Tracy's primary caregivers, have grown older and less mobile. After all, the smallest thing can become an emergency.

"A common cold is a trip to intensive care for weeks," Doug said.

It's a frightening notion, living that way. Doug calls it an endurance race.

But his wife has a strategy.

"My thing is to try to keep positive," she said. "My son keeps me laughing. Him and my husband."

•The GoFundMe campaign to help Tracy Lloyd buy an accessible van is found here: http://www.gofundme.com/tracylloyd.

•An awareness event/fundraiser will be held at 7 p.m. May 29 at St. John's UCC 1415 Rising Sun Road, Laurys Station. It will include the screening of a documentary, "Hope on The Horizon," produced by HARK, a New Jersey ALS charity. The event is free but donations will be accepted on behalf of the Lloyds.